Liz Carr: 'I was told all the time I wouldn't live to be old – and I believed it' (2024)

Image: © Linda Nylind / Guardian / eyevine

Liz Carr was born in Bebington, Merseyside, in April 1972. Shewas disabled from age seven, owing to arthrogryposis multiplex congenita, and has used a wheelchair since she was 14. She studied law at the University of Nottingham, where she became involved in politics, disabled rights and activism.After graduating she volunteered in a law centre and became a campaigner for civil rights for disabled people in the UK and internationally.

In 2000 she co-founded the comedy group, Nasty Girls. In 2003, Liz studied performing arts with Graeae Theatre Company and London Met University and performed in productions of Mother Courage, The vagin* Monologues and The Exception and the Rule among others.

In 2005 she joined the comedy group Abnormally Funny People, she was a finalist in the Funny Women competition 2006 and in 2007 she was runner-up in the Hackney Empire New Act competition. She has taken six shows to Edinburgh Fringe, two shows to Melbourne Comedy Festival, toured all over the world with her comedy, her cabaret and with her one woman show, It Hasn’t Happened Yet.On screen, Liz is best known for her role as forensic examiner Clarissa Mullery in the long running BBC drama, Silent Witness.

Speaking to The Big Issue for herLetter to My Younger Self,Liz Carr looks back on facing prejudices, comedy inspirations and finding love.

From my appearance most people will think I was born disabled, but I wasn’t [Carr was disabled from age seven, owing to arthrogryposis multiplex congenita, and has used a wheelchair since she was 14]. So I understand what becoming disabled means. Although I was only seven, I went from being one kind of person – popular, fit, conventionally attractive – to another. Suddenly I was not popular any more. Kids were scared of me and I was excluded from so many things because they weren’t accessible.

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I was led to believe that unless I could walk and do everything for myself, I didn’t have a chance in life. I was quite ill as a teen, so I only went part time to school. Every holiday I went to Wexham Park Hospital. And most evenings and weekends were doing physio. It was miserable, because I was told repeatedly that I couldn’t be any of the things I want to be.

I grew into the person I wanted to be, but I certainly wasn’t her at 16. My good music choices were from my older brother. Left to my own devices, I’d listen to a lot of Phil Collins and (I’m embarrassed to say this) Hooked on Classics. But comedy was really important to me. I’d never watched something that made me cry laughing until An Audience with Billy Connolly. It was the funniest thing I’d ever seen. We booked tickets to see him at Liverpool Empire and I remember the language. My dad would swear, but never the F word – I say it all the time. So this left us a bit shellshocked.

I wanted nice clothes but couldn’t get them because I’m little. The drugs I took meant I didn’t grow past the age of seven. I remember going to Dolcis in the Pyramids in Birkenhead with my mum. Classy! Shoes were important to me, but the manager said: “You don’t walk, so you don’t need shoes.” Even as a business model, that’s bad. But people think they can say these things to us and they won’t hurt. Yet clearly, 40 years later, I’m still carrying that around. These days I wear incredible heels and shoes. I’m stubborn like that.

I’d like to befriend the younger me. During lockdown, my mum would ring most nights. She was sorting the house, doing that Swedish death cleaning thing. She’d go through old diaries and call with the most harrowing bits. It would be, “What did you have for your tea? Did you know you wanted to die when you were 12?” Now, I knew I was miserable but to say I’d rather be dead? It hurts me to hear that my younger self didn’t see a future. I would love to tell her you’ll fall in love, have mates, travel the world and do a job people can only dream of. She wouldn’t have believed any of it.

I’ve never not known that I’m loved. Whatever I’ve done, my parents supported me. But I need help to go to the loo, get dressed, make a meal, and knew I had to get away from home otherwise my parents would have to look after me forever. I got a place at Nottingham to study law. At uni they provided volunteers to support us, so this was the first time people other than my mum had to assist me – I was 18 and had to find the language to tell someone how to give me a hand in the shower or dress me. It was hard to learn, really embarrassing. I also had to mingle with other disabled people for the first time. I realised how much we had in common and loved it. To feel OK in that world was the hugest relief.

I was told all the time that I wouldn’t live to be old, and I believed it. I thought I was going to die as a teenager. I thought I was going to die as a 20-year-old. Then I thought I would die by 30. So I’d love to tell my younger self that she won’t die young – because I’ve wasted a lot of my life worrying needlessly. And there’s a lot of things we do need to worry about.

There is a way of viewing disability that takes it away from being this individual problem and says it’s the barriers in society that are the issue. I went on a course in a care home in Ross-on-Wye, and within three hours my life changed forever. I met a woman called Sue. She had everything I wanted: lived on her own, had a partner, worked, was funny. Sue took me under her wing. Before the course I’d think, I can’t get on the bus because I can’t walk and that’s my problem. They said, what if the buses were all accessible? And it was like a celestial moment. My life’s lightbulb moment. I don’t have to do everything on my own to be dignified and have a good life. It’s called the social model of disability. Once you take the guilt off you, it’s the world around you that has to change. That’s where activism started for me.

Non-violent direct action is a privilege to be part of. I started to run the Disabled People’s Direct Action Network (DAN) in Nottingham and we had some big protests. Our most successful was around public transport – there’s something about being in the middle of the road that’s exciting. We’d say: “I’m sorry you’re inconvenienced for 20 minutes until the police come, but we can’t get on this bus any day.” It’s a powerful visual representation.

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Drama at school was inaccessible and I didn’t think I could act because I didn’t see disabled actors on TV. So the idea I would be stopped in the street most days because people will have seen me on Silent Witness or The OA, which is what happened today, felt completely impossible. Doing The Normal Heart at the National Theatre meant so much to me on so many levels. My character was based on a disabled woman called Linda Laubenstein, a doctor who did so much to help gay men during the Aids crisis in the 1980s. I can’t imagine the barriers she must have overcome. I can’t imagine there will ever be a better role. It came at a tough time. Covid was hard and still is. Yet, in the rehearsal room, I felt like I belonged. I didn’t feel like an imposter. Winning an Olivier Award made it even more special.

I could have had more affairs of the heart – and more sex – if I’d believed in me more. We often do things later, disabled people. Leaving home, working, relationships. I didn’t lose my virginity until my late 20s. I remember feeling that I’m a pretty good person, so I couldn’t understand. But I also did get it. We’re not seen as viable partners. So the advice to young me would be try everything. Take risks. Be open to everything. At the time, I just wanted a boyfriend because that’s what you did. I didn’t have a sense that I would be a lesbian or bisexual. But then Jo was there – she’s a recruiter lesbian, anyway – and we fell in love.

If I could relive one day, it’s going to be a cliché, but it would be my wedding day. We had a Day of the Dead-inspired wedding. When they said ‘you may kiss the brides’, a mariachi band appeared; we had frozen margaritas. Having a big wedding really mattered to us both, for different reasons. We wanted to celebrate with the living and the dead – we thought, we’re going to get fewer presents from the dead, but they’re gonna cost less, food-wise! No, but Sue, who changed my life completely, I only knew for seven years before she died. Jo’s dad had died when she was eight. If you are part of the crip community, you lose a lot of friends. I proposed through an advent calendar on Christmas Eve 2009, and my dad started writing his speech on Boxing Day. It was beautiful.

There’s no way I expected to get married. Admitting this makes me queasy, but I remember thinking if I ever married someone, it would have to be a doctor because they’d know how to look after me. And that’s so f*cked up. It shows how medicalised and how sick you see yourself when you’re disabled. All those sh*tty, negative low expectations have to be overcome. But I like proving people wrong. And maybe I don’t know how to live without a fight.

Liz Carr’s documentary Better Off Dead airs on BBC One and iPlayer, 14 May at 9pm.

This article is taken from The Big Issue magazine, which exists to give homeless, long-term unemployed and marginalised people the opportunity to earn an income.

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